Wednesday, November 25, 2015

The Diagnosis

There it was in black and white. It wasn't a surprise; in fact, it was exactly what I'd been suspecting for years. Still, on paper it looked so official, so permanent, so undeniable. Autism spectrum disorder, level one. Before the diagnostic label changed, this would have been called Aspergers disorder. Level one is now used to signify a high level of functioning. The diagnosis specified an exclusion of verbal or cognitive delays. It's all very clinical. Except it's not. It's my child.

He's the same child he was before the diagnosis, but I'm not the same parent. As one friend put it, I'm now part of a club that no one wanted to join, but if you have to join the "autism mom's group" you will find a lot of support. We came to this diagnosis after a seven hour two day psychological evaluation. I know a lot of parents with children on the spectrum can pinpoint an age where their child changed or regressed, a time when they began to notice something was a little different. I can pinpoint this time to when my child turned three. I used to joke that he bypassed the terrible twos and became totally different at three. Except it really wasn't a joke. Of course, the question even science cannot yet answer isn't why but what? What causes autism? Is it linked to the mysterious week long high fever my son contracted two weeks before his third birthday? Is it genetic, biological, or both? Is there a causal relationship between autism and vaccines or diet? I can't answer any of these questions, and if I have learned one thing through curve balls in life it's to make peace with the not knowing. It's human to want answers. When we know why something happened, it is easier to wrap our heads around it. In reality not everything has a discernible reason.

I will most likely never know the why of my son's autism, but I know the what. I know what to call the bundle of symptoms: the non stop talk about obsessive interests, the difficulty reading social cues, the separation anxiety, the sensitivity to smells and noises, the rigidity and the outbursts. More importantly, I also know the who. The part that can't be summed up on paper. The boy who insisted on using his own money to buy his brother a birthday present. The boy who is incredibly smart, who can tell you all about garbage and recycling, and more recently, Kidz Bop and Taylor Swift. The boy who is fiercely loyal to his friends and does not hesitate to stand up for a classmate being picked on. The boy who asks if we can learn about undertows in school this week. The boy who thinks more than the average person and also has an impressive degree of self awareness. Sometimes when he is still awake two or three hours after being tucked in he will tell me, "Mom, sometimes my mind gets the best of me. It's like a computer with pictures in it and the pictures keep coming up on the screen." I am glad that he can explain this. The who I knew before the diagnosis.

So what does a "label" mean, exactly? The very use of labels is controversial. Despite efforts to raise awareness, there still exists a pervasive belief that autism is nothing but the latest fad label. Awareness of the spectrum is limited. Some people have an image of autism as a kid that can't communicate at all. Some have an image of a quirky genius. Autism is both of these things and neither of these things; the autism spectrum is everything in between. The saying goes, "If you've met one person with autism then you've met one person with autism", Why the label? The diagnosis is a tool. The diagnosis tells me not only the what but the where and the how. I know where to turn for support, resources, and the therapies that will help my child and us as his parents manage his struggles and build upon his strengths. I know how to understand his beautiful mind a little better and I know how to meet his needs. Not entirely, of course. Not perfectly. But better.

We have decided to continue homeschooling, gradually increasing the hours he spends at the school he attends for homeschooled children. The teacher and administrators have already been wonderfully accommodating, intervening promptly and effectively when he was having difficulties with a classmate, allowing him to choose not to participate in recess, and allowing him to participate in the chapel with fewer children when the all school chapel was too loud and overwhelming for him. The latter two accommodations were made without me asking. The small classroom of only nine kids and the small lunchroom allow him to be more comfortable but still challenges him to function socially and within a group. He is also in an environment where his individuality and needs are respected, which is the best way for him to learn. He will also begin participation in a social skills group and take classes at the local public school. His IQ tested in the 94th percentile, so we are hoping to get him in some advanced classes that meet his need to be challenged and his comfort level. Finally, we are working on visual schedules to help him with transitions. He does best when he knows what to expect and has some control over his environment.

When he is old enough to understand we will tell him about his diagnosis, because it is nothing to hide. We never want him to feel ashamed. It will be up to us to explain what it means. He has difficulties that many people don't experience, but he also has a unique way of seeing the world. He can understand things that others cannot. He feels more deeply and thinks more intently, which means his lows may be lower but his highs will also be higher. When he's old enough I plan to have him volunteer with me one Saturday a month when I work with kids on the spectrum. I believe that God calls us to use not only our gifts but also our struggles to help others. I want him to use his unique mind to understand and reach out to other kids who might be struggling, or might not seem to fit in.

 That will be his lesson. Mine is to always trust my parenting instincts. When my son started kindergarten at five I saw him sitting in the lunchroom with his hands tightly over his ears and tears rolling down his face while kids talked over and around him. I saw the teacher carry him into the classroom kicking and screaming. I listened when he begged me not to make him keep going to that school. I listened to my instinct and to my child, not to the "experts" who told me, "Oh, Mrs. Clark, kids do this. He's fine. He'll adjust. Maybe you just need to learn to let go?" Or maybe my child is on the spectrum and cannot handle a noisy lunchroom or a crowded classroom or a long school day. I tried to tell myself it was just a phase, he was just young, things would work themselves out, but I didn't believe it. As a parent, you know your child. If you know in your gut something is going on, don't let the word "just" enter your vocabulary. You are the first expert and only advocate for your child. Trust yourself and trust your child.

 If you are a fellow autism parent, I can't tell you why your child has autism, but I can tell you why your child has you: because you are the best for them. You are the perfect person to love them, struggle with them, fight for them, guide them, and sometimes just fumble blindly through the dark with them. If autism is not a part of your life, I simply ask you to understand that there is no single picture of autism. That child in the grocery store who is too old to be acting like that might be on the spectrum. So might the cashier. By the same token, a child on the spectrum may appear to be function no differently than any other child, but this doesn't mean the diagnosis is any less legitimate. This same child may go home tonight and refuse to sleep until all of his money is counted and he had read no more or less than three chapters in his book. If you've met my son you've met an intelligent, empathetic, loyal, intuitive boy who will talk your ear off about Taylor Swift and Kidz Bop. You've also met one person with autism.

Monday, November 9, 2015

Being Instead of Doing: Holiday Happiness

The holiday season is upon us. It's that time of the year when many of us vow to make this one count, to put aside the chaos and just enjoy time spent with family and friends without getting overly complicated with gifts, decorations or elaborate celebrations. It's the vow I make every year and the one I consistently break.

I often shake my head at how early the stores get on the holiday bandwagon, putting up decorations before Halloween. Some even start in September, just after the kids start back to school. But, even though I don't want to be reminded of the winter holidays before I get a handle on fall, these months seem to fly by at an alarming rate. Once school starts, time is measured in school days that seem to be shorter than summer days. When you add in school, sports, activities, appointments, and homework, there doesn't seem to be enough time in the day to accomplish it all. Now add in over a month of holiday preparation with school performances, special events, parties, clothes shopping, gift buying, baking, and cooking. Days shrink, hours fly, and many find themselves just trying to get through the holidays rather than enjoying them - often welcoming January and the end of all the fuss.

How do we find time to enjoy these next two months with a loaded calendar of obligations? I recently wrote a novel about a mother who dies tragically and comes back to her family as a ghost. She is given an opportunity to view her life - her shortcomings, and her achievements. Most importantly and sadly, she realizes her busy life got in the way of what she truly wanted.

"She was so busy doing that she wasn’t being. Too worried about the future rather than focusing on the present."

How many times are we too busy doing and not being? I often remind myself of this failure - my failure to be present in the moment, to take it all in and enjoy each minute as though it were my last. It's easy to get sucked into the everyday tasks that consume us, and when we add the holidays to our already hectic schedule, we tend to become stressed and have difficulty enjoying this time that's all about giving thanks, celebrating life, family, and the joy that each brings. 

This year I have decided I am going to work on really celebrating the holidays without the stress I have added to it in years past. I am not going to flip out if my Thanksgiving meal doesn't go as planned; I'm not going to spend countless hours shopping for unnecessary gifts while wading through packed malls with crabby, rude people. I'm not going to pack my calendar with activities that don't fill me with the spirit of the holidays or spend money just because 'tis the season! Instead, I'm going to just be this holiday season. How? Here are some tips, you may find helpful that I hope to follow:

1. If you must shop, do it early! The number one stressor for me is shopping. I get so busy the closer I get to Christmas, I don't seem to have much time to shop and eventually find myself swearing under my breath as I rummage through the picked over items less than a week before Christmas. I end up buying random shit (yes, shit) that will probably never be used or appreciated by its recipient - they needed something to unwrap so why not unwrap shit? How much money am I going to save by waiting for the sales? Is it worth crawling over people or losing time I could be reading a book by the fire or having treasured time with family or friends? Nope.

2. Bake ahead of time and enjoy! Set a day to bake some of your favorite holiday treats ahead of the rush. You can freeze them and take them out when you are ready to enjoy them. Have someone stopping by for a glass of hot spiked cider? Pull out your cookies and soak in the holiday visit. Also, stock your pantry with easy snacks you can pull out if company pays a visit. Keep some cream cheese and salsa or other perishables that have a long shelf life in the fridge for easy snacks.

3. Buy hostess gifts and wrap ahead. Have them ready "just in case" you are invited to a party or get-together. I don't usually have time to run out and get a gift each time I am invited somewhere. Having some things on hand, takes the stress out of attending these events.

4. Wrap gifts a little at a time, so you are not doing it at three in the morning! I am so guilty of waiting until the night before Christmas to wrap, not realizing how much I have to wrap and kicking myself the entire night, swearing I will not do it next year (but I do anyway!). 

5. Plan time with friends and family - those who you cherish and want to celebrate with. Many have them - the family who we don't jive with. Those who we see out of obligation - that's almost unavoidable. But make sure you spend extra time with those who make you happy and who won't give you the white glove test or don't care if you didn't get them a gift.

6. Plan fun time with your family. Take an evening to play board games, watch a special movie, bake cookies, enjoy community events. Put it on the calendar and commit to spending that time. Time with family is something you will never get back. Kids grow up, parents age and the time will come when not everyone will be able to be together. Make this time count so you never regret what you wish you would have done - just do it!

7. Take time to do something for someone less fortunate. Sponsor a family for Thanksgiving, Christmas or a holiday you celebrate. Work at a soup kitchen, collect toys for the needy, help a senior decorate their home, invite someone from the military who can't go home for the holidays to have Thanksgiving or Christmas with you. There are so many ways to share the holidays with your family and those less fortunate or lonely. This is the season of giving, and the best type of giving doesn't cost a cent. What you give, comes back and warms your heart, knowing you have touched the life of someone else.

8. Keep the house in order. Give each family member a job so the house stays in some order during the holidays. The goal is to keep it tidy enough that if someone pops in, you don't have to run around like a crazy person and clean. Have the kids pick up their things and bring them to their rooms before they go to bed, load dishwasher and run it while you sleep, keep kitchen counters clean and de-cluttered, tidy up one room that you can entertain guests. Life happens in our homes every day and we can't expect our homes to be spotless. If we spend just a few minutes every day keeping down the mess, it will be ready for those wonderful, impromptu get-togethers. 

7. STOP and listen. Listen to what this holiday season is telling you. It's probably telling you to slow down, inhale, reflect, appreciate, give thanks and just be. It won't be easy to push aside what you think you have to do, but when January comes around, knowing you made the most of the holidays by being instead of doing will be empowering and intrinsically rewarding. If only we could box and wrap the time we would traditionally spend shopping and hand it to those we love, we would have countless hours of laughter, memories and a sense of belonging beyond any monetary gift. Truly, the best gift we could ever give is time.